Jamie Heywood: The big idea my brother inspired

45,802 views ・ 2010-02-02

TED


Please double-click on the English subtitles below to play the video.

Prevodilac: Tatjana Jevdjic Lektor: Silvija Varga
00:15
When my brother called me in December of 1998,
0
15260
3000
Kada me je brat u decembru 1998. nazvao,
00:18
he said, "The news does not look good."
1
18260
2000
rekao je: “Vesti nisu dobre.”
00:20
This is him on the screen.
2
20260
2000
Ovo je on na ekranu.
00:22
He'd just been diagnosed with ALS,
3
22260
2000
Upravo su mu postavili dijagnozu ALS-a,
00:24
which is a disease that the average lifespan is three years.
4
24260
4000
bolesti kod koje je prosečno preživljavanje tri godine.
00:28
It paralyzes you. It starts by killing
5
28260
2000
Ona vas parališe. Počinje uništavanjem
00:30
the motor neurons in your spinal cord.
6
30260
3000
motornih neurona u vašoj kičmenoj moždini.
00:33
And you go from being a healthy,
7
33260
2000
I vi od zdravog,
00:35
robust 29-year-old male
8
35260
3000
snažnog 29-godišnjeg muškarca postanete
00:38
to someone that cannot breathe,
9
38260
2000
neko ko ne može da diše,
00:40
cannot move, cannot speak.
10
40260
3000
ne može da se kreće, ne može da govori.
00:46
This has actually been, to me, a gift,
11
46260
4000
Ovo je, u stvari, za mene bio poklon,
00:50
because we began a journey
12
50260
3000
krenuli smo na put na kojem ćemo
00:53
to learn a new way of thinking about life.
13
53260
3000
naučiti da o životu razmišljamo na nov način.
00:56
And even though Steven passed away three years ago
14
56260
4000
Iako je Stiven preminuo pre tri godine,
01:00
we had an amazing journey as a family.
15
60260
2000
kao porodica smo prešli neverovatan put.
01:02
We did not even --
16
62260
3000
Nije samo da smo
01:05
I think adversity is not even the right word.
17
65260
2000
imali poteškoće, to nije dovoljno reći.
01:07
We looked at this and we said, "We're going to do something with this
18
67260
3000
Gledali smo na to kao na nešto što
01:10
in an incredibly positive way."
19
70260
2000
ćemo iskoristiti na pozitivan način.
01:12
And I want to talk today
20
72260
2000
Danas želim da govorim
01:14
about one of the things that we decided to do,
21
74260
3000
o jednoj od stvari koju smo odlučili da uradimo,
01:17
which was to think about a new way of approaching healthcare.
22
77260
4000
a to je da osmislimo nov pristup zdravstvenom sistemu.
01:21
Because, as we all know here today,
23
81260
2000
Budući da, kao što svi znamo,
01:23
it doesn't work very well.
24
83260
2000
on ne funkcioniše dobro.
01:25
I want to talk about it in the context of a story.
25
85260
3000
O tome želim da govorim u kontekstu priče.
01:28
This is the story of my brother.
26
88260
2000
Ovo je priča mog brata.
01:30
But it's just a story. And I want to go beyond the story,
27
90260
3000
Ali, to je samo priča. Želim da odem iza te priče
01:33
and go to something more.
28
93260
2000
u nešto veće.
01:35
"Given my status, what is the best outcome
29
95260
3000
"Imajući u vidu moje stanje, koji je najbolji ishod
01:38
I can hope to achieve, and how do I get there?"
30
98260
3000
kojem mogu da se nadam i kako da ga postignem?"
01:41
is what we are here to do in medicine, is what everyone should do.
31
101260
3000
To je ono što se radi u medicini, što svi treba da radimo.
01:44
And those questions all have variables to them.
32
104260
2000
Sva ta pitanja imaju svoje promenljive.
01:46
All of our statuses are different.
33
106260
2000
Svako od nas ima različit status.
01:48
All of our hopes and dreams, what we want to accomplish,
34
108260
2000
Sve naše nade i snovi, ono što želimo da postignemo
01:50
is different, and our paths will be different,
35
110260
2000
je drugačije i naši putevi će biti različiti,
01:52
they are all stories.
36
112260
2000
sve su to priče.
01:54
But it's a story until we convert it to data
37
114260
2000
Ali to ostaje priča dok je ne pretvorimo u podatke,
01:56
and so what we do, this concept we had,
38
116260
2000
i ono što radimo, ideja koju smo imali je
01:58
was to take Steven's status, "What is my status?"
39
118260
3000
da pođemo od Stivenovog stanja: “Kakvo je moje stanje?”,
02:01
and go from this concept of walking, breathing,
40
121260
5000
da krenemo od koncepta hodanja, disanja,
02:06
and then his hands, speak,
41
126260
3000
zatim upotrebe šaka i govora
02:09
and ultimately happiness and function.
42
129260
4000
i konačno do njegovog zadovoljstva i smisla života.
02:13
So, the first set of pathologies, they end up in the stick man
43
133260
2000
Dakle, krenemo od slabosti, one se postave na ovaj crtež,
02:15
on his icon,
44
135260
2000
na njegovu ikonicu,
02:17
but the rest of them are really what's important here.
45
137260
3000
ali sve ostalo je ono što je ovde zaista bitno.
02:20
Because Steven, despite the fact that he was paralyzed,
46
140260
3000
Jer Stiven je, i pored toga što je bio paralizovan
02:23
as he was in that pool, he could not walk,
47
143260
3000
kao što je u ovom bazenu, kada nije mogao da hoda
02:26
he could not use his arms -- that's why he had the little floaty things on them,
48
146260
2000
ili da koristi svoje ruke -- zbog čega ima ove male plutajuće stvari na njima,
02:28
did you see those? --
49
148260
2000
da li ste ih videli? --
02:30
he was happy. We were at the beach,
50
150260
2000
bio srećan. Bili smo na plaži,
02:32
he was raising his son, and he was productive.
51
152260
2000
odgajao je svog sina, stvarao je.
02:34
And we took this, and we converted it into data.
52
154260
5000
To smo uzeli i pretvorili u podatak.
02:39
But it's not a data point at that one moment in time.
53
159260
2000
Ali to nije jedan podatak u jednom trenutku.
02:41
It is a data point of Steven in a context.
54
161260
2000
To je podatak o Stivenu vezan za kontekst.
02:43
Here he is in the pool. But here he is healthy,
55
163260
2000
Ovde je u bazenu. Ali ovde je zdrav,
02:45
as a builder: taller, stronger,
56
165260
3000
kao preduzimač: viši, snažniji,
02:48
got all the women, amazing guy.
57
168260
2000
dobijao je sve žene, neverovatan momak.
02:50
Here he is walking down the aisle,
58
170260
2000
Ovde ide prema oltaru,
02:52
but he can barely walk now, so it's impaired.
59
172260
3000
ali sada jedva hoda, znači postoji slabost.
02:55
And he could still hold his wife's hand, but he couldn't do buttons on his clothes,
60
175260
2000
I dalje je mogao da drži svoju ženu za ruku, ali nije mogao da se zakopča,
02:57
can't feed himself.
61
177260
2000
nije mogao sam da jede.
02:59
And here he is, paralyzed completely,
62
179260
2000
Evo ga ovde, potpuno oduzet,
03:01
unable to breathe and move, over this time journey.
63
181260
2000
nesposoban da diše i da se kreće, u ovom vremenskom pregledu.
03:03
These stories of his life, converted to data.
64
183260
3000
Ove priče njegovog života su pretvorene u podatke.
03:06
He renovated my carriage house
65
186260
2000
Renovirao je moju zgradu za kočije
03:08
when he was completely paralyzed, and unable to speak,
66
188260
2000
dok je bio potpuno paralizovan, nije mogao da govori,
03:10
and unable to breathe, and he won an award for a historic restoration.
67
190260
6000
ni da diše, a osvojio je nagradu za istorijsku restauraciju.
03:16
So, here's Steven alone, sharing this story in the world.
68
196260
2000
Ovde je Stiven sam, nesebično deleći svoju priču sa drugima.
03:18
And this is the insight, the thing that we are
69
198260
3000
A ovo je sagledavanje zbog kojeg
03:21
excited about,
70
201260
2000
smo uzbuđeni,
03:23
because we have gone away from the community that we are,
71
203260
3000
jer smo se udaljili od zajednice kakva jesmo,
03:26
the fact that we really do love each other and want to care for each other.
72
206260
3000
od toga da zaista volimo jedni druge i želimo da brinemo jedni o drugima.
03:29
We need to give to others to be successful.
73
209260
2000
Moramo davati drugima da bismo bili uspešni.
03:31
So, Steven is sharing this story,
74
211260
3000
Tako Stiven učestvuje sa svojom pričom,
03:34
but he is not alone.
75
214260
2000
ali nije usamljen.
03:36
There are so many other people sharing their stories.
76
216260
2000
Postoje mnogi drugi ljudi koji dele svoje priče.
03:38
Not stories in words, but stories in data and words.
77
218260
3000
Ne priče u rečima, nego priče u podacima i rečima.
03:41
And we convert that information into this structure,
78
221260
3000
Tu informaciju pretvaramo u ovu strukturu,
03:44
this understanding, this ability to convert
79
224260
3000
ovo razumevanje, ovo svojstvo pretvaranja
03:47
those stories into something that is computable,
80
227260
2000
njihovih priča u nešto merljivo,
03:49
to which we can begin to change the way
81
229260
2000
u nešto čime možemo da započnemo promenu načina
03:51
medicine is done and delivered.
82
231260
2000
kako se lečenje izvodi i sprovodi.
03:53
We did this for ALS. We can do this for depression,
83
233260
2000
Uradili smo to za ALS. Isto možemo uraditi za depresiju,
03:55
Parkinson's disease, HIV.
84
235260
2000
Parkinsonovu bolest, HIV.
03:57
These are not simple, they are not internet scalable;
85
237260
2000
Ove konverzije nisu jednostavne, ne mogu se meriti na internetu;
03:59
they require thought and processes
86
239260
2000
one zahtevaju razmišljanje i postupke
04:01
to find the meaningful information about the disease.
87
241260
3000
da bi se pronašla značajna informacija o ovim bolestima.
04:04
So, this is what it looks like when you go to the website.
88
244260
3000
Ovako izgleda kad odete na sajt.
04:07
And I'm going to show you what Patients Like Me,
89
247260
3000
Pokazaću vam šta je “Patients Like Me”,
04:10
the company that myself, my youngest brother
90
250260
2000
kompanija koju sam osnovao sa najmlađim bratom
04:12
and a good friend from MIT started.
91
252260
2000
i dobrim prijateljem sa Instituta za tehnologiju Masačusetsa.
04:14
Here are the actual patients, there are 45,000 of them now,
92
254260
3000
Ovde su stvarni pacijenti, sada ih ima oko 45 000
04:17
sharing their stories as data.
93
257260
2000
i oni učestvuju sa svojim pričama koje su pretvorene u podatke.
04:19
Here is an M.S. patient.
94
259260
2000
Ovde je pacijent oboleo od MS-a (multiple skleroze).
04:21
His name is Mike, and he is uniformly impaired
95
261260
2000
Zove se Majk i ima podjednako oštećene
04:23
on cognition, vision, walking, sensation.
96
263260
3000
kogniciju, vid, hod, senzibilitet.
04:26
Those are things that are different for each M.S. patient.
97
266260
2000
To je različito za svakog obolelog od MS-a.
04:28
Each of them can have a different characteristic.
98
268260
2000
Svaki od njih može da ima različite osobine.
04:30
You can see fibromyalgia, HIV, ALS, depression.
99
270260
5000
Možete videti fibromialgiju, HIV, ALS, depresiju.
04:35
Look at this HIV patient down here, Zinny.
100
275260
3000
Pogledajte ovog obolelog od HIV-a, Zini.
04:38
It's two years of this disease. All of the symptoms are not there.
101
278260
3000
Ovo je druga godina trajanja bolesti. Još nema sve simptome.
04:41
But he is working to keep his CD4 count high
102
281260
2000
Ali radi na tome da održi visoke vrednosti CD4
04:43
and his viral level low so he can make his life better.
103
283260
3000
i titar virusa niskim, da bi mogao da živi bolje.
04:46
But you can aggregate this and you can discover things about treatments.
104
286260
4000
Ali ovo možete da objedinite i otkrijete ponešto o lečenjima.
04:50
Look at this, 2,000 people almost, on Copaxone.
105
290260
2000
Pogledajte ovo, skoro 2 000 obolelih uzima Kopakson.
04:52
These are patients currently on drugs,
106
292260
2000
Ovo su pacijenti koji su sada na lekovima
04:54
sharing data.
107
294260
2000
i dele podatke.
04:56
I love some of these, physical exercise, prayer.
108
296260
3000
Volim neke od ovih, fizičko vežbanje, molitva.
04:59
Anyone want to run a comparative effectiveness study
109
299260
2000
Da li neko želi da radi komparativnu studiju efikasnosti
05:01
on prayer against something? Let's look at prayer.
110
301260
2000
molitve u odnosu na nešto drugo? Pogledajmo molitvu.
05:03
What I love about this, just sort of interesting design problems.
111
303260
4000
Ono što volim u vezi s ovim, samo izmislite kao zanimljive probleme.
05:07
These are why people pray.
112
307260
2000
Ovo su razlozi zašto se ljudi mole.
05:09
Here is the schedule of how frequently they -- it's a dose.
113
309260
2000
Ovde je raspored koliko se često mole -- to je doza.
05:11
So, anyone want to see the 32 patients that pray for 60 minutes a day,
114
311260
3000
Da li neko želi da vidi da li se ova 32 pacijenta,
05:14
and see if they're doing better, they probably are.
115
314260
2000
koji se mole 60 minuta dnevno, osećaju bolje, verovatno da.
05:16
Here they are. It's an open network,
116
316260
3000
Evo ih ovde. To je otvorena mreža,
05:19
everybody is sharing. We can see it all.
117
319260
3000
svako učestvuje sa podacima. Možemo sve da vidimo.
05:22
Or, I want to look at anxiety, because people are praying for anxiety.
118
322260
3000
Ili želim da proučavam anksioznost, jer ljudi se mole zbog anksioznosti.
05:25
And here is data on 15,000 people's current anxiety, right now.
119
325260
5000
Ovde su podaci o trenutnoj anksioznosti 15 000 ljudi.
05:30
How they treat it,
120
330260
3000
Kako je leče,
05:33
the drugs, the components of it,
121
333260
3000
kojim lekovima, kojim sastojcima,
05:36
their side effects, all of it in a rich environment,
122
336260
3000
njihovi neželjeni efekti, sve to u različitim životnim prilikama,
05:39
and you can drill down and see the individuals.
123
339260
2000
koje možete proučavati do pojedinaca.
05:41
This amazing data allows us to drill down and see
124
341260
3000
Ovi neverovatni podaci vam dozvoljavaju da dođete
05:44
what this drug is for --
125
344260
3000
do upotrebe ovog leka --
05:47
1,500 people on this drug, I think. Yes.
126
347260
2000
mislim da je 1 500 ljudi na ovom leku. Da.
05:49
I want to talk to the 58 patients down here
127
349260
2000
Želim da razgovaram sa ovih 58 pacijenata
05:51
who are taking four milligrams a day.
128
351260
2000
koji uzimaju četiri miligrama dnevno.
05:53
And I want to talk to the ones of those that have been doing
129
353260
2000
Želim da razgovaram samo sa onima koji uzimaju tu dozu
05:55
it for more than two years.
130
355260
6000
duže od dve godine.
06:01
So, you can see the duration.
131
361260
2000
Prema tome, možete videti trajanje.
06:03
All open, all available.
132
363260
4000
Sve je otvoreno, sve je dostupno.
06:07
I'm going to log in.
133
367260
4000
Sada ću se ulogovati.
06:11
And this is my brother's profile.
134
371260
2000
Ovo je profil mog brata.
06:13
And this is a new version of our platform we're launching right now.
135
373260
4000
Ovo je nova verzija naše platforme koju upravo sada puštamo.
06:17
This is the second generation. It's going to be in Flash.
136
377260
2000
To je druga generacija. Biće u Flashu.
06:19
And you can see here, as this animates over,
137
379260
3000
Ovde možete videti, preko ovih animacija,
06:22
Steven's actual data against the background of all other patients,
138
382260
3000
Stivenove stvarne podatke nasuprot pozadine koju čine svi drugi pacijenti,
06:25
against this information.
139
385260
3000
u poređenju sa tom informacijom.
06:28
The blue band is the 50th percentile. Steven is the 75th percentile,
140
388260
2000
Plava traka je 50 posto. Stiven je na 75 posto,
06:30
that he has non-genetic ALS.
141
390260
3000
pošto ima negenetski ALS.
06:33
You scroll down in this profile and you can see
142
393260
2000
Pregledajući taj profil možete da vidite
06:35
all of his prescription drugs,
143
395260
2000
sve njegove prepisane lekove,
06:37
but more than that, in the new version, I can look at this interactively.
144
397260
3000
ali više od toga, u ovoj novoj verziji, mogu da pregledam interaktivno.
06:40
Wait, poor spinal capacity.
145
400260
2000
Sačekajte, slabost leđa.
06:42
Doesn't this remind you of a great stock program?
146
402260
2000
Zar vas ovo ne podseća na veliki program akcija?
06:44
Wouldn't it be great if the technology we used to take care of ourselves
147
404260
2000
Zar ne bi bilo sjajno kada bi tehnologija, koju koristimo za brigu o sebi,
06:46
was as good as the technology we use to make money?
148
406260
3000
bila jednako dobra kao i tehnologija koju koristimo da zaradimo novac?
06:49
Detrol. In the side effects for his drug,
149
409260
2000
Detrol. Među neželjenim efektima njegovih lekova,
06:51
integrated into that, the stem cell transplant that he had,
150
411260
2000
integrisana u njih, je transplantacija matičnih ćelija koju je imao
06:53
the first in the world, shared openly for anyone who wants to see it.
151
413260
6000
prvi u svetu, razmenjena otvoreno za svakog ko želi da je vidi.
06:59
I love here -- the cyberkinetics implant,
152
419260
2000
Sviđa mi se ovo -- kibernetička proteza,
07:01
which was, again, the only patient's data that was online and available.
153
421260
4000
što je, ponovo, bio jedini podatak o pacijentu, onlajn i dostupan.
07:05
You can adjust the time scale. You can adjust the symptoms.
154
425260
2000
Možete podesiti vremensku skalu. Možete podesiti simptome.
07:07
You can look at the interaction between how I treat my ALS.
155
427260
4000
Možete da vidite interakciju između mojih lekova za ALS.
07:11
So, you click down on the ALS tab there.
156
431260
2000
Mogu da pritisnem ovaj ALS tab.
07:13
I'm taking three drugs to manage it. Some of them are experimental.
157
433260
3000
Uzimam tri leka da bih se lečio. Neki od njih su eksperimentalni.
07:16
I can look at my constipation, how to manage it.
158
436260
2000
Mogu da vidim moju opstipaciju i kako da je rešavam.
07:18
I can see magnesium citrate, and the side effects
159
438260
2000
Mogu da vidim magenzijum citrat, neželjene efekte
07:20
from that drug all integrated in the time
160
440260
2000
tog leka koji su integrisani u
07:22
in which they're meaningful.
161
442260
3000
značajnom vremenu.
07:25
But I want more.
162
445260
2000
Ali želim više.
07:27
I don't want to just look at this cool device, I want to take this
163
447260
2000
Ne želim samo da gledam u ovaj sjajan izum, želim od ovog
07:29
data and make something even better.
164
449260
2000
podatka da napravim nešto još bolje.
07:31
I want my brother's center of the universe and his symptoms
165
451260
3000
Želim da centar sveta mog brata, njegove simptome
07:34
and his drugs,
166
454260
3000
njegove lekove
07:37
and all of the things that interact among those,
167
457260
2000
i sve te stvari koje deluju jedna na drugu,
07:39
the side effects, to be in this beautiful data galaxy
168
459260
3000
neželjene efekte, stavim u ovo divno sazvežđe podataka,
07:42
that we can look at in any way we want to understand it,
169
462260
3000
koje možemo da proučavamo na koji god želimo način da bi ga razumeli,
07:45
so that we can take this information
170
465260
3000
tako da sa ovom informacijom možemo
07:48
and go beyond just this simple model
171
468260
4000
da odemo dalje od ovog jednostavnog modela,
07:52
of what a record is.
172
472260
3000
medicinskog kartona.
07:55
I don't even know what a medical record is.
173
475260
2000
Čak i ne znam šta je medicinski karton.
07:57
I want to solve a problem. I want an application.
174
477260
2000
Želim da rešim problem, želim aplikaciju.
07:59
So, can I take this data -- rearrange yourself,
175
479260
3000
Dakle, mogu li ovi podaci -- nakon što se sortiraju,
08:02
put the symptoms in the left, the drugs across the top,
176
482260
2000
simptomi stave levo, lekovi prekoputa na vrh,
08:04
tell me everything we know about Steven and everyone else,
177
484260
2000
da mi kažu sve što znamo o Stivenu i svakom drugom
08:06
and what interacts.
178
486260
3000
i šta je međusobno zavisno.
08:09
Years after he's had these drugs,
179
489260
2000
Godinama nakon što je uzimao ove lekove,
08:11
I learned that everything he did to manage his excess saliva,
180
491260
3000
naučio sam sve što je činio da bi se rešio preterane salivacije,
08:14
including some positive side effects that came from other drugs,
181
494260
3000
uključujući korisne propratne efekte nekih drugih lekova,
08:17
were making his constipation worse.
182
497260
2000
što je pogoršavalo opstipaciju.
08:19
And if anyone's ever had severe constipation,
183
499260
2000
Ukoliko ste bilo kad imali tešku opstipaciju
08:21
and you don't understand how much of an impact that has on your life --
184
501260
2000
onda razumete koliko to mnogo utiče na vaš život --
08:23
yes, that was a pun.
185
503260
3000
da, to je bila igra reči.
08:26
You're trying to manage these,
186
506260
2000
Pokušavate to da rešite,
08:28
and this grid is available here,
187
508260
2000
a ovde je mreža
08:30
and we want to understand it.
188
510260
3000
koju želimo da razumemo.
08:33
No one's ever had this kind of information.
189
513260
3000
Niko do sad nije imao tu vrstu informacije.
08:36
So, patients have this. We're for patients.
190
516260
2000
Pacijenti je sad imaju. Mi smo za pacijente.
08:38
This is all about patient health care, there was no doctors on our network.
191
518260
2000
Sve ovo se tiče brige o pacijentu, nije bilo lekara u našoj mreži.
08:40
This is about the patients.
192
520260
2000
Ovo se odnosi na pacijenate.
08:42
So, how can we take this and bring them a tool
193
522260
3000
Kako možemo od ovoga da stvorimo sredstvo kojim
08:45
that they can go back and they can engage the medical system?
194
525260
2000
oboleli mogu da se vrate i uključe u medicinski sistem?
08:47
And we worked hard, and we thought about it and we said,
195
527260
3000
Naporno smo radili i razmišljali o tome i rekli:
08:50
"What's something we can use all the time,
196
530260
2000
“Šta je to što možemo da koristimo sve vreme,
08:52
that we can use in the medical care system,
197
532260
2000
što možemo da upotrebimo u sistemu zdravstvene zaštite,
08:54
that everyone will understand?"
198
534260
2000
a svi će razumeti?”
08:56
So, the patients print it out,
199
536260
2000
Pacijenti su to odštampali,
08:58
because hospitals usually block us
200
538260
2000
zato što nas bolnice obično blokiraju
09:00
because they believe we are a social network.
201
540260
3000
misleći da smo društvena mreža.
09:03
It's actually the most used feature on the website.
202
543260
2000
To je u stvari najviše korišćena osobina ovog sajta.
09:05
Doctors actually love this sheet, and they're actually really engaged.
203
545260
3000
Lekari zapravo vole ovu stranicu i veoma su uključeni.
09:08
So, we went from this story of Steven
204
548260
3000
Počeli smo od ove priče o Stivenu,
09:11
and his history to data, and then back to paper,
205
551260
3000
od njegove istorije do podataka, a zatim nazad na papir,
09:14
where we went back and engaged the medical care system.
206
554260
1000
gde smo ponovo uključili zdravstveni sistem.
09:15
And here's another paper.
207
555260
2000
Ovde je još jedan članak.
09:17
This is a journal, PNAS --
208
557260
2000
Ovo je časopis, PNAS --
09:19
I think it's the Proceedings of the National Academy of Science
209
559260
2000
mislim da je Zbornik nacionalne akademije nauka
09:21
of the United States of America.
210
561260
2000
SAD-a.
09:23
You've seen multiple of these today, when everyone's bragging about
211
563260
2000
Danas ste videli dosta ovakvih, gde se svako hvali
09:25
the amazing things they've done.
212
565260
2000
neverovatnim stvarima koje su uradili.
09:27
This is a report about a drug called lithium.
213
567260
2000
Ovo je izveštaj o leku koji se zove litijum.
09:29
Lithium, that is a drug used to treat bipolar disorder,
214
569260
4000
Litijum se koristi za lečenje bipolarnog poremećaja,
09:33
that a group in Italy found
215
573260
2000
a italijanski tim je pronašao,
09:35
slowed ALS down in 16 patients, and published it.
216
575260
3000
u grupi od 16 pacijenata, da usporava ALS i to su objavili.
09:38
Now, we'll skip the critiques of the paper.
217
578260
2000
Za sada ćemo zanemariti sve kritike ovog rada.
09:40
But the short story is: If you're a patient,
218
580260
2000
Ali, ukratko: ako ste pacijent
09:42
you want to be on the blue line.
219
582260
2000
želite da budete na plavoj liniji.
09:44
You don't want to be on the red line, you want to be on the blue line.
220
584260
2000
Ne želite da budete na crvenoj liniji, želite da budete na plavoj.
09:46
Because the blue line is a better line. The red line
221
586260
2000
Zato što je plava linija bolja. Crvena je
09:48
is way downhill, the blue line is a good line.
222
588260
2000
put naniže, plava linija je dobra linija.
09:50
So, you know we said -- we looked at this, and what I love also
223
590260
4000
Znate, rekli smo -- mi smo ovo proučili, a takođe volim
09:54
is that people always accuse these Internet sites
224
594260
2000
to što ljudi stalno optužuju ove Internet sajtove
09:56
of promoting bad medicine and having people do things irresponsibly.
225
596260
3000
da podstiču loše lečenje i čine da ljudi neodgovorno rade stvari.
09:59
So, this is what happened when PNAS published this.
226
599260
3000
Isto se dogodilo i kad je PNAS ovo objavio.
10:02
Ten percent of the people in our system took lithium.
227
602260
3000
Deset posto ljudi u našem sistemu je počelo da uzima litijum.
10:05
Ten percent of the patients started taking lithium based on 16 patients of data
228
605260
3000
Počeli su da uzimaju litijum na osnovu podataka dobijenih na 16 pacijenata
10:08
in a bad publication.
229
608260
2000
u lošem članku.
10:10
And they call the Internet irresponsible.
230
610260
2000
I oni kažu da je Internet neodogovoran.
10:12
Here's the implication of what happens.
231
612260
2000
Ovde je nagoveštaj onog što se desilo.
10:14
There's this one guy, named Humberto, from Brazil,
232
614260
3000
Ovde je jedan momak, zove se Umberto, iz Brazila
10:17
who unfortunately passed away nine months ago,
233
617260
3000
koji je, nažalost, preminuo pre devet meseci,
10:20
who said, "Hey, listen. Can you help us answer this question?
234
620260
2000
koji je pitao: “Slušajte. Možete li nam pomoći da odgovorimo na pitanje?
10:22
Because I don't want to wait for the next trial, it's going to be years.
235
622260
3000
Ne želim da čekam na sledeće ispitivanje, proći će godine.
10:25
I want to know now. Can you help us?"
236
625260
2000
Želim da znam sada. Možete li da nam pomognete?”
10:27
So, we launched some tools, we let them track their blood levels.
237
627260
3000
Tako smo izbacili neke alate, dozvolili smo im da prate nivoe u krvi.
10:30
We let them share the data and exchange it.
238
630260
2000
Dozvolili smo im da razmenjuju i dele ove podatke.
10:32
You know, a data network.
239
632260
3000
Znate, mreža podataka.
10:35
And they said, you know, "Jamie, PLM,
240
635260
2000
Oni su tražili: “Džejmi, da li vi,
10:37
can you guys tell us whether this works or not?"
241
637260
2000
momci iz PLM-a, možete da nam kažete da li je efikasan ili ne?”
10:39
And we went around and we talked to people,
242
639260
2000
Raspitivali smo se, razgovarali sa ljudima
10:41
and they said, "You can't run a clinical trial like this. You know?
243
641260
2000
i odgovorili su nam: “Ne možete tako voditi kliničko ispitivanje. Znate?
10:43
You don't have the blinding, you don't have data,
244
643260
2000
Nemate slepu studiju, nemate podatke,
10:45
it doesn't follow the scientific method.
245
645260
2000
ne pratite naučni metod.
10:47
It's never going to work. You can't do it."
246
647260
2000
To tako nikad neće funkcionisati. Ne možete to da uradite.”
10:49
So, I said, "Okay well we can't do that. Then we can do something harder."
247
649260
3000
Rekao sam: “OK, ne možemo to da uradimo. Onda možemo nešto teže.”
10:52
(Laughter)
248
652260
3000
(Smeh)
10:55
I can't say whether lithium works in all ALS patients,
249
655260
2000
Ne mogu da kažem da li je litijum efikasan kod svih obolelih od ALS-a,
10:57
but I can say whether it works in Humberto.
250
657260
3000
ali mogu da kažem da li je efikasan za Umberta.
11:00
I bought a Mac about two years ago, I converted over,
251
660260
2000
Kupio sam Mac pre oko dve godine, preobratio sam se,
11:02
and I was so excited about this new feature of the time machine
252
662260
2000
bio sam veoma zainteresovan za ovu novu osobinu vremenskog alata
11:04
that came in Leopard. And we said -- because it's really cool,
253
664260
2000
koja je došla sa Leopardom. Rekli smo -- jer je veoma dobra,
11:06
you can go back and you can look at the entire history of your computer,
254
666260
2000
možete da odete u prošlost, pregledate svu istoriju vašeg kompjutera
11:08
and find everything you've lost, and I loved it.
255
668260
2000
i pronađete sve što ste izgubili, to sam obožavao.
11:10
And I said, "What if we built a time machine for patients,
256
670260
4000
Rekao sam: “Šta ako napravimo vremenski alat za pacijente,
11:14
except instead of going backwards, we go forwards.
257
674260
3000
ali umesto da idemo u prošlost, idemo u budućnost.
11:17
Can we find out what's going to happen to you,
258
677260
3000
Možemo li da otkrijemo šta će se tebi dogoditi,
11:20
so that you can maybe change it?"
259
680260
3000
tako da bi to možda mogao da promeniš?”
11:23
So, we did. We took all the patients like Humberto,
260
683260
3000
To smo i uradili. Uzeli smo sve pacijente koji su kao Umberto,
11:26
That's the Apple background, we stole that because we didn't have time
261
686260
2000
to je Apple-ova pozadina, ukrali smo je jer nismo imali vremena
11:28
to build our own. This is a real app by the way.
262
688260
2000
da napravimo našu. Uzgred rečeno, ovo je stvarna aplikacija.
11:30
This is not just graphics.
263
690260
2000
Ovo nije samo grafika.
11:32
And you take those data, and we find the patients like him, and we bring
264
692260
2000
Uzmete te podatke, pronađete pacijente kao on i sakupite
11:34
their data together. And we bring their histories into it.
265
694260
4000
njihove podatke. Donesemo njihove istorije u to.
11:38
And then we say, "Well how do we line them all up?"
266
698260
2000
Zatim kažemo: “Dobro, kako da ih obradimo?”
11:40
So, we line them all up so they go together
267
700260
2000
Sve smo ih grupisali tako da su usaglašeni
11:42
around the meaningful points,
268
702260
2000
oko značajnih tačaka,
11:44
integrated across everything we know about the patient.
269
704260
2000
integrisani kroz sve podatke koje znamo o pacijentu.
11:46
Full information, the entire course of their disease.
270
706260
4000
Potpuna informacija, kao što je celokupni tok njihove bolesti.
11:50
And that's what is going to happen to Humberto,
271
710260
2000
To će se dogoditi Umbertu
11:52
unless he does something.
272
712260
2000
ukoliko ništa ne preduzme.
11:54
And he took lithium, and he went down the line.
273
714260
3000
Uzeo je litijum i nastavio da se pogoršava.
11:57
And it works almost every time.
274
717260
3000
Ovo važi skoro za svakog pacijenta.
12:00
Now, the ones that it doesn't work are interesting.
275
720260
2000
Sada, interesantni su oboleli koji su izuzetak.
12:02
But almost all the time it works.
276
722260
3000
Ali skoro uvek može da se primeni.
12:05
It's actually scary. It's beautiful.
277
725260
2000
To je zapravo zastrašujuće. To je divno.
12:07
So, we couldn't run a clinical trial, we couldn't figure it out.
278
727260
2000
Dakle, nismo mogli da radimo kliničko ispitivanje niti da ga protumačimo.
12:09
But we could see whether it was going to work for Humberto.
279
729260
3000
Ali mogli smo da vidimo da li će biti efkasno za Umberta.
12:12
And yeah, all the clinicians in the audience will talk about power
280
732260
2000
Svi kliničari u publici će govoriti o snazi ispitvanja
12:14
and all the standard deviation. We'll do that later.
281
734260
2000
i o standardnim devijacijama. O tome ćemo posle.
12:16
But here is the answer
282
736260
4000
Ali tu je odgovor u obliku
12:20
of the mean of the patients that actually decided
283
740260
2000
proseka pacijenata koji su zaista odlučili
12:22
to take lithium.
284
742260
2000
da uzmu litijum.
12:24
These are all the patients that started lithium.
285
744260
2000
Ovo su svi pacijenti koji su počeli da uzimaju litijum.
12:26
It's the Intent to Treat Curve.
286
746260
2000
To je kriva namere za lečenje.
12:28
You can see here, the blue dots on the top, the light ones,
287
748260
4000
Ovde možete videti, ove svetle plave tačke na vrhu,
12:32
those are the people in the study in PNAS
288
752260
2000
to su ljudi u studiji u PNAS-a,
12:34
that you wanted to be on. And the red ones are the ones,
289
754260
2000
u toj grupi tačaka želite da budete. A crvene,
12:36
the pink ones on the bottom are the ones you didn't want to be.
290
756260
2000
ružičaste ovde na dnu, su one gde ne želite da budete.
12:38
And the ones in the middle are all of our patients
291
758260
3000
A ove u sredini su svi naši pacijenti
12:41
from the start of lithium at time zero,
292
761260
2000
koji su počeli sa litijumom u nultom vremenu,
12:43
going forward, and then going backward.
293
763260
4000
idući unapred, a zatim unazad.
12:47
So, you can see we matched them perfectly, perfectly.
294
767260
3000
Vidite da smo ih savršeno usaglasili, savršeno.
12:50
Terrifyingly accurate matching.
295
770260
2000
Zastrašujući savršeno usaglašavanje.
12:52
And going forward, you actually don't want to be a lithium patient this time.
296
772260
4000
Gledajući unapred, ovaj put stvarno ne želite da uzimate litijum.
12:56
You're actually doing slightly worse -- not significantly,
297
776260
2000
Zaista vam je nešto lošije -- ne značajno,
12:58
but slightly worse. You don't want to be a lithium patient this time.
298
778260
3000
ali malo lošije. Ovaj put ne želite da uzimate litijum.
13:01
But you know, a lot of people dropped out,
299
781260
3000
Ali znate, dosta ljudi je odustalo,
13:04
the trial, there is too much drop out.
300
784260
2000
mislim od ispitivanja, previše je odustalo.
13:06
Can we do the even harder thing? Can we go to the patients
301
786260
2000
Možemo li da uradimo nešto još teže? Da nađemo pacijente
13:08
that actually decided to stay on lithium,
302
788260
4000
koji su stvarno odlučili da ostanu na litijumu
13:12
because they were so convinced they were getting better?
303
792260
2000
jer su bili veoma uvereni da će im biti bolje?
13:14
We asked our control algorithm,
304
794260
2000
Pitali smo naš kontrolni algoritam
13:16
are those 69 patients -- by the way, you'll notice
305
796260
2000
za tih 69 pacijenata -- uzgred, primetićete
13:18
that's four times the number of patients in the clinical trial --
306
798260
3000
da je to četiri puta više pacijenata nego u kliničkoj studiji --
13:21
can we look at those patients and say,
307
801260
3000
možemo li da gledamo u te pacijente i da odgovorimo:
13:24
"Can we match them with our time machine
308
804260
3000
“Možemo li našim vremenskim alatom da ih uporedimo
13:27
to the other patients that are just like them,
309
807260
2000
sa drugim, njima sličnim, pacijentima
13:29
and what happens?"
310
809260
2000
i šta se tada događa?”
13:31
Even the ones that believed they were getting better
311
811260
3000
Čak i oni koji su verovali da se oporavljaju
13:34
matched the controls exactly. Exactly.
312
814260
3000
su tačno usaglašeni sa kontrolama. U potpunosti.
13:37
Those little lines? That's the power.
313
817260
2000
Ove male linije? To je snaga.
13:39
So, we -- I can't tell you lithium doesn't work. I can't tell you
314
819260
2000
Mogu da vam kažem da litijum ne deluje. Mogu da vam kažem
13:41
that if you did it at a higher dose
315
821260
2000
da ako ga uzimate u većim dozama
13:43
or if you run the study proper -- I can tell you
316
823260
2000
ili ako radite potpunu studiju -- mogu da vam kažem
13:45
that for those 69 people that took lithium,
317
825260
4000
da tih 69 pacijenata koji su uzimali litijum
13:49
they didn't do any better than the people that were just like them,
318
829260
2000
nisu bili ništa bolje nego njima slični pacijenti,
13:51
just like me,
319
831260
2000
meni slični pacijenti,
13:53
and that we had the power to detect that at about
320
833260
3000
a imali smo moć da ovo otkrijemo u
13:56
a quarter of the strengths reported in the initial study.
321
836260
3000
četvrtini jačina saopštenih u inicijalnoj studiji.
13:59
We did that one year ahead of the time
322
839260
3000
To smo uradili godinu dana pre
14:02
when the first clinical trial funded by the NIH
323
842260
2000
nego što je prvo kliničko ispitivanje, Nacionalni institut za zdravlje ga je finansirao
14:04
for millions of dollars failed for futility last week,
324
844260
3000
milionima dolara, prošle nedelje proglašeno
14:07
and announced it.
325
847260
3000
neuspešnim zbog uzaludnosti.
14:10
So, remember I told you about my brother's stem cell transplant.
326
850260
3000
Setite se, govorio sam vam o transplantaciji matičnih ćelija mog brata.
14:13
I never really knew whether it worked.
327
853260
3000
Nikad nisam saznao da li je to delovalo.
14:16
And I put 100 million cells in his cisterna magna,
328
856260
3000
Stavio sam 100 miliona ćelija u veliku cisternu
14:19
in his lumbar cord,
329
859260
2000
njegove kičmene moždine,
14:21
and filled out the IRBs and did all this work,
330
861260
2000
popunio sve te formulare i sve to uradio,
14:23
and I never really knew.
331
863260
3000
a da nikad nisam saznao istinu.
14:26
How did I not know?
332
866260
2000
Kako sam mogao da ne znam?
14:28
I mean, I didn't know what was going to happen to him.
333
868260
2000
Mislim, nisam znao šta će se njemu desiti,
14:30
I actually asked Tim, who is the quant in our group --
334
870260
3000
pitao sam Tima koji je matematičar u našoj grupi --
14:33
we actually searched for about a year to find someone
335
873260
3000
oko godinu dana smo tražili nekoga
14:36
who could do the sort of math and statistics and modeling
336
876260
2000
ko bi mogao da uradi tu vrstu matematike, statistike i modeliranja
14:38
in healthcare, couldn't find anybody. So, we went to the finance industry.
337
878260
3000
u zdravstvu, nismo nikog mogli da nađemo. Prešli smo na finansijski sistem.
14:41
And there are these guys who used to model the future
338
881260
2000
Tamo su bili ovi momci koji su modelirali kretanje
14:43
of interest rates, and all that kind of stuff.
339
883260
2000
kamatnih stopa i tome slično.
14:45
And some of them were available. So, we hired one.
340
885260
3000
Neki od njih su bili slobodni. Jednog smo angažovali.
14:48
(Laughter)
341
888260
3000
(Smeh)
14:51
We hired them, set them up, assisting at lab.
342
891260
2000
Angaživali smo ih, postavili ih kao laboratorijske asistente.
14:53
I I.M. him things. That's the way I communicate with him,
343
893260
2000
Slao sam mu instant poruke. To je način komunikacije sa njim,
14:55
is like a little guy in a box. I I.M.ed Tim. I said,
344
895260
2000
kao mali dečak u kutiji. Rekao sam:
14:57
"Tim can you tell me whether my brother's stem cell transplant
345
897260
2000
“Time, možeš li da mi ogovoriš da li je transplantacija matičnih ćelija
14:59
worked or not?"
346
899260
3000
kod mog brata bila uspešna ili ne?”
15:02
And he sent me this two days ago.
347
902260
3000
Ovo mi je poslao pre dva dana.
15:05
It was that little outliers there. You see that guy that lived a long time?
348
905260
3000
To su bila ova mala odstupanja. Vidite ovog čoveka koji je dugo živeo?
15:08
We have to go talk to him. Because I'd like to know what happened.
349
908260
2000
Moramo da razgovaramo sa njim. Jer bih želeo da znam šta se dogodilo.
15:10
Because something went different.
350
910260
2000
Nešto je bilo drugačije.
15:12
But my brother didn't. My brother went straight down the line.
351
912260
3000
Moj brat nije dugo živeo. Išao je pravo naniže.
15:15
It only works about 12 months.
352
915260
2000
Predviđanje važi samo oko 12 meseci.
15:17
It's the first version of the time machine.
353
917260
2000
Ovo je prva verzija vremenskog alata.
15:19
First time we ever tried it. We'll try to get it better later
354
919260
2000
Prvi put da smo je uopšte testirali. Pokušaćemo kasnije da je poboljšamo,
15:21
but 12 months so far.
355
921260
3000
ali za sada je pouzdana 12 meseci.
15:24
And, you know, I look at this,
356
924260
4000
Znate, kad gledam ovo
15:28
and I get really emotional.
357
928260
2000
zaista postajem veoma ganut.
15:30
You look at the patients, you can drill in all the controls,
358
930260
2000
Procenjujete pacijente, možete iznova da proučavate sve kontrole,
15:32
you can look at them, you can ask them.
359
932260
2000
možete da ih posmatrate, da ih pitate.
15:34
And I found a woman that had --
360
934260
3000
Našao sam ženu koja je imala --
15:37
we found her, she was odd because she had data
361
937260
2000
našli smo je, a bila je neobična jer je imala podatke
15:39
after she died.
362
939260
2000
nakon smrti.
15:41
And her husband had come in and entered her last functional scores,
363
941260
3000
Njen suprug se ulogovao i uneo njene poslednje funkcionalne bodove,
15:44
because he knew how much she cared.
364
944260
3000
jer je znao koliko joj je stalo.
15:47
And I am thankful.
365
947260
3000
Zahvalan sam na tome.
15:50
I can't believe that these people,
366
950260
2000
Ne mogu da verujem da su mi ovi ljudi,
15:52
years after my brother had died,
367
952260
2000
godinama nakon što je moj brat umro,
15:54
helped me answer the question about whether
368
954260
2000
pomogli da odgovorim na pitanje o tome
15:56
an operation I did, and spent millions of dollars on
369
956260
3000
da li je operacija koju je imao, na koju sam godinama ranije
15:59
years ago, worked or not.
370
959260
2000
potrošio milione dolara, bila efikasna ili ne.
16:01
I wished it had been there
371
961260
2000
Voleo bih da je ovo postojalo
16:03
when I'd done it the first time,
372
963260
2000
kad je urađena prvi put
16:05
and I'm really excited that it's here now,
373
965260
2000
i zaista sam uzbuđen što je to sada ovde,
16:07
because the lab that I founded
374
967260
5000
jer laboratorija koju sam osnovao
16:12
has some data on a drug that might work,
375
972260
2000
ima neke podatke o leku koji bi mogao da deluje,
16:14
and I'd like to show it.
376
974260
4000
što bih hteo da izložim.
16:18
I'd like to show it in real time, now,
377
978260
2000
Voleo bih da ga prikažem u stvarnom vremenu, sada,
16:20
and I want to do that for all of the diseases that we can do that for.
378
980260
5000
želim isto da uradim i za druge bolesti kod kojih je moguće.
16:25
I've got to thank the 45,000 people
379
985260
3000
Moram da se zahvalim ovim ljudima, njih 45 000
16:28
that are doing this social experiment with us.
380
988260
3000
koji sa nama učestvuju u socijalnom eksperimentu.
16:31
There is an amazing journey we are going on
381
991260
3000
To je neverovatno putovanje na koje smo krenuli
16:34
to become human again,
382
994260
2000
da bi ponovo bili ljudi,
16:36
to be part of community again,
383
996260
3000
da bi ponovo bili deo zajednice,
16:39
to share of ourselves, to be vulnerable,
384
999260
2000
da bi dali deo sebe, da budemo ranjivi
16:41
and it's very exciting. So, thank you.
385
1001260
3000
a to je veoma uzbudljivo. Hvala.
16:44
(Applause)
386
1004260
5000
(Aplauz)
About this website

This site will introduce you to YouTube videos that are useful for learning English. You will see English lessons taught by top-notch teachers from around the world. Double-click on the English subtitles displayed on each video page to play the video from there. The subtitles scroll in sync with the video playback. If you have any comments or requests, please contact us using this contact form.

https://forms.gle/WvT1wiN1qDtmnspy7